Gavin Quimby — better known as “Super Gav” — died last fall from a rare genetic disorder, but he and the work of his family lives on in potentially saving other children.
The Winona boy’s illness and legacy was the centerpiece of a Wednesday event at Winona Health, where state Sen. Jeremy Miller announced the addition of three disorders to a list of conditions for which all Minnesota newborns will be screened.
“We’ve been working on this for nearly two years and a lot of time and effort has been put in this,” said Miller, who carried the Super Gav Act at the state Capitol. “But we finally got it done.”
Gavin died last September from metachromatic leukodystrophy, a rare genetic disorder found mostly in children that causes the brain and nervous system to progressively lose function. It’s not curable, but early detection is key, and while other states had already been screening for the disease, Minnesota wasn’t on that list.
That omission angered Gavin’s parents, Nick and Shanna Quimby — “so we decided to take action,” Nick said.
Unfortunately, there isn’t yet a test that accurately detects Gavin’s disorder, but in the process of crafting the bill, the three other disorders were identified and approved.
The mandatory screening will begin in January 2017, enhancing one of the most comprehensive newborn screening programs in the country, according to assistant state health commissioner Paul Allwood, who attended Wednesday’s event.
“We’re proud of what we’ve been able to accomplish with the help of Senator Miller, the community and everyone involved,” Nick said.
The community in particular played a key role in June 2015, when Gavin cemented his status as Super Gav during a full day of saving the community, from scoring the winning touchdown in a Winhawks football game to foiling a robbery.
As his story spread through the community, it also led to significant fundraising efforts, including the 2015 Dancing With the Winona Stars, where a number of family and friends performed a superhero routine.
The screening celebrated Wednesday plays “a small but critically important role in the wellbeing of future newborns,” Miller said. “Super Gav will now be a superhero.”
Meanwhile, the work continues. Nick and Shanna said there are doctors, including at the Mayo Clinic, who are working to find a way to test for the disorder, so it can be added to Minnesota’s list down the road. That, they said, is their ultimate goal.
Shannon said it’s hard to express exactly how the family feels after seeing their hard work pay off, but summed it up with one word: